11 excellent links
Sex! Arrhythmias! Living a good life! And more!
Like a magpie snatches up shiny objects, I collect links related to life with a weird and special heart. My preoccupations run the gamut from a striking essay on arrhythmias to a research study on anxiety before cardiac procedures. Below, you’ll find 11 of the best items I’ve amassed in recent months.
One thing I haven’t been able to find is a good, accessible guide to heart failure for people with congenital heart disease. So, in case you missed it, I’m writing one myself. If you haven’t shared your story with me, please get in touch at theheartdialogues@substack.com. (More details here; you can also share your story in the comments there.) It’s so important to include patient voices in this guide.
One last thing: I’ve tried to include gift links where possible, but a couple of these articles might require a subscription. As a journalist whose livelihood depends on a paywall, I urge you to look at this not as a frustration but as a necessity that makes this work possible.
Now, on to the links!
The good news? Americans are living longer. The bad news? They’re spending less time in good health, The Wall Street Journal reports (gift link). The bad news isn’t all bad news, though. The change is partly the result of medical advances turning terminal diseases (CHD, for example) into chronic ones.
On a related note, I want to stick this excerpt from Alain de Botton's latest book, published in
’s , to my fridge. For now, here’s a sample:“If the goal is to have a longer life, whatever the dieticians may urge, it would seem that the priority should be not to add raw increments of time but to ensure that whatever years remain feel appropriately substantial. The aim should be to densify time rather than to try to extract one or two more years from the grip of Death.”
🎧 Our relationship with exercise is allowed to evolve as aging, injury, illness or other inevitable side effects of life come up. This episode of NPR’s “Life Kit” podcast offers advice on how to adapt your fitness plan as your body changes.
Do CHD patients get more anxious before procedures than patients with acquired heart disease? Not exactly. In a recent study, researchers surveyed 291 heart patients before a cardiac catheterization, just under a third of whom had CHD. The two groups showed similar levels of state anxiety, or the kind that comes up in response to stressful situations; CHD patients, meanwhile, had higher levels of trait anxiety, the kind that shows up persistently in everyday life. Participants who were younger, under financial stress or had CHD of great complexity experienced the highest levels of anxiety.
Adversity can also lead to positive transformation. This Wall Street Journal piece, written by a former colleague after a brutal couple of years, looks at the meaning of post-traumatic growth (gift link) and how to foster it.
Anyone who has experienced arrhythmias will want to read this gorgeous and terrifying essay published a couple of years ago in The New Yorker. Lorraine Boissoneault, whose supraventricular tachycardia surfaces when she’s a newbie journalist in New York City, compares the “string of erratic beats” and “rapid and forceful booming” to the sudden and temporary chaos of a storm.
🎧 “I’ve had open heart surgeries more times than I’ve had sex,” Clare Almand says on this June episode of The New York Times’ “Modern Love” podcast. Back in 2018, Almand wrote about her congenital heart disease (gift link) for the Times, specifically about her quest to lose her virginity at age 30, fearful she was running out of time. (Though she doesn’t specify in the piece, Almand has Shone’s complex, according to this 2018 post on the Adult Congenital Heart Association website.)
Speaking of which, this paper is an amazingly thorough look at sexual health in the CHD population, from body image to medication side effects to considerations for queer and trans patients. The authors, several of whom are friends of this newsletter, note that healthcare providers often overlook support for a fulfilling sexual life.
“As the outcome for individuals with ACHD improves, the focus of care needs to move from reducing mortality to facilitating well-being in its fullest sense. Providing the resources for [healthcare providers] and those living with CHD to be able to discuss sexual well-being is another step toward a holistic approach to quality of life.”
What happens when the overwhelming majority of scientific research is focused on cis men? A gaping hole in understanding menstruation, sports injuries, eating disorders and, well, just our bodies in general.
writer interviewed Christine Yu, author of “Up to Speed: The Groundbreaking Science of Women Athletes,” about the ramifications. Plus, a helpful section on how to evaluate scientific papers.“Once admitted, I wanted the doctors and nurses to like me, to know I knew we were all doing our best, so I cracked jokes and forced a smile. The jocularity, the smiling, all of it was the test of a watchful patient: if the doctors were still laughing at my jokes, then they were not only paying attention, but whatever news they were bringing me could not be that bad.”
’s far-ranging essay in Dirt tells the story of his diagnosis of endocarditis and valve-replacement surgery, but it is more rightly about what it means to be a patient, the necessity and impermanence of gratitude, and a life lived next to the presence of death.If you’re like me, and the term “heart warrior” makes you cringe, I recommend this essay on language in chronic illness spaces by
. She’s the writer of , a Substack about what it means to live with chronic illness. (It’s been dormant for the past year, but the archives are a great resource.)“Inherent in the warrior narrative, and other militaristic terminology, is that an illness or disability is something that people can beat. They can win if only they fight hard enough. But, as anyone who has tried to cure themselves of a lifelong chronic illness can tell you, it’s just a lot more nuanced than that.”
By the way, “it’s just a lot more nuanced than that” could be the slogan of this newsletter.
Love that you included a piece from Beth DeCarbo. She gave me my first freelance gig at Newsday while I was still in high school.
Leigh, these are great links! Thank you so much for sharing these amazing resources.